Cabazitaxel Journey

User

Posted 01 Jul 2016 at 21:27

Hi, an update on my OH as it's been a bit rocky just recently.

My hubby now has a number of treatments behind him which are no longer working, i.e HT, Docetaxel, Enzalutamide and now Radium 223 of which he only had 4 cycles as PSA shooting up at an alarming rate of knots. Oh, also had a try at Casodex post Radium 223 and that had no effect whatsoever.

We have just been today to sign the consent to start Cabazitaxel as in a very short space of time his PSA is now 4,891 and Hb down at 8.1.

He is having a blood transfusion on Monday and then he will start Cabazitaxel on Friday 8 July. The PSA needs to be addressed as although latest scans show no spread to soft tissue and no increase in bone spread, that may not be the case if nothing is done. So, the 2nd chemo journey begins. He is currently in a lot of pain and we are trying to get the pain management right with Macmillan and the hospital.

Whilst the chemo is ongoing we are also going through the referral process for TOPARP trial (Olariparib) and awaiting appointment to do consent so they can send off his original biopsy samples so see if he is eligible. This may then be another treatment option post cabaizitaxel.

It's bloody hard at the moment but trying to bat on, we have no other option, but I do worry what happens after cabazitaxel.

Take care everyone.

Glen

User

Posted 01 Jul 2016 at 21:47

Hi Glen,

Really sorry to read this i have got everything crossed that the chemo can bring the PSA back down.

It's a hard old journey isn't it.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 01 Jul 2016 at 22:24

Hi Glen

Such hard times for you both, it feels so wrong sometimes to continually bombard the body with all these drugs but the alternative is too grim isn't it? I'm hoping the cabazitaxel will help with the pain as well as knock that PSA level back.

Thinking of you both

Love Devonmaid xxxxx

User

Posted 01 Jul 2016 at 22:28

Hi Glen,

So sorry the options are narrowing but hope that this chemo gives you some space. It is a road with temporary solutions all along the way and disappointments and I do understand that feeling, though have a few more boxes to open yet for me so not nearing that point where nothing can be offered. It must be scary but best to focus on the hear and now and the fact that there is no soft tissue spread (of which I am the same) has always seemed to me to be the biggest bonus, so long may that be so. I do think about you both and always look out for news. Good luck.

User

Posted 01 Jul 2016 at 22:42

Thinking of you both and hoping the chemo improves things

Rosy x

User

Posted 02 Jul 2016 at 09:41

Hi Glen

Mt heart reaches out to you.It's a hard journey I know and so empathise with you. We're not so far behind you on this journey and could soon be changig our course of treatment.

I so hope cabazitaxel helps to reduce psa.

Stay strong and positive.

Take care

Lesley xx

User

Posted 28 Jul 2016 at 18:02

Hope it perks him up a bit, Glen.

As I've mentioned, Tony wasn't eligible for that trial; however, the biopsy results from om the RM did enable a more accurate assesment of the state of his cancer than routine treatment would have done. And at least we knew that the best specialists in the country had assessed him and agreed as to what treatment would or wouldn't help.

User

Posted 28 Jul 2016 at 20:49

Fingers crossed the blood will help Glen.

Thinking of you both.

Love

Devonmaid xxxx

User

Posted 28 Jul 2016 at 23:38

I do hope he responds well to the blood and is feeling better soon. David used to respond better to transfusions the lower his Hb was and it did make a big difference to the tiredness and breathlessness. Thinking of you both x

User

Posted 29 Jul 2016 at 22:08

Hi Glen

Homemade cottage pie, yum yum! Can I come for tea?!!

Hope blood transfusion improves his energies. Stay strong Glen.

Lesley xx

User

Posted 29 Jul 2016 at 23:24

Hi Glen,

Really hoping the bloods will help and I am sure the cottage pie will go down well. I am thinking my lot could do with some home cooking.

BFN

JulieX

NEVER LAUGH AT A LIVE DRAGON

User

Posted 30 Jul 2016 at 08:20

I hope the bloods have helped and that Phil is accepted onto the TOPARP trial.

David

User

Posted 08 Aug 2016 at 08:26

Sorry to hear it's all dragging on like this, Glen. It all sounds horribly familiar, but if Phil's chemo has only been put back a week, it looks as if it should all move forward soon.

In Tony's case, the onco didn't seem to think the low Hb would be a problem: a transfusion could take place shortly before or after the chemo, he said. The problem was the platelet count, which dropped after the first chemo and never got back up to a level that would make further chemo safe. Because of the bone biopsy done by the Royal Marsden, we knew that the bone marrow was now involved, which is why things are progressing in this way. Have you had any news from them yet about the olaparib trial?

Marje

User

Posted 08 Aug 2016 at 17:20

Fingers crossed for you that you get the pain and Hb under control quickly

User

Posted 08 Aug 2016 at 18:04

Tough times particularly when pain management awry. Really hope they can sort a pain regime which suits. So crucial for you both. Thinking of you!

User

Posted 08 Aug 2016 at 22:49

Thinking of you Glen,

Sometimes this path is not just rocky but full of flipping boulders.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 11 Aug 2016 at 22:35

Glen, I know what you mean about delays and plans, I hope that the pain relief has been adjusted since your post.

AlwAys thinking of you

Love

Devonmaid xxx

User

Posted 12 Aug 2016 at 17:34

I'm sure he's in good hands, Glen. We have had two home visits from the hospice nurse so far and are very impressedby the care they offer. Tony is still trying to get his medication right, and seems to be having daily phone calls about the amount of morphine etc. Is Phil taking steroids? They often help with appetite.
Hope he soon ger sorted and can come home to you.
Marje

User

Posted 12 Aug 2016 at 22:54

I hope all continues well with the hospice. Make sure you get some rest and a bit of recuperation for yourself as well while he's being looked after!

User

Posted 12 Aug 2016 at 23:31

Rosy makes a great point Glen, I can only imagine how shattered you must be. He's being looked after and I hope that means you are getting some decent sleep.

Lots of love

Devonmaid xxx

User

Posted 13 Aug 2016 at 21:06

Just wanted you to know that I am thinking of you Glen fingers crossed that the hospice can get everything sorted .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 14 Aug 2016 at 09:48

Hi Glen

If the hospice is as good as the Hospice Mick was In and where I subsequently worked for 18m, he is in the very best place to get things under some control. They should be able to get his pain meds balanced to provide relief but prevent over drowsy effects. They will definitely work on his appetite, encouraging him to eat high protein and possibly boosting calorific intake with some drink supplements. If he needs any blood work doing they should be able to arrange for that to be done there too.

They should also really encouraage him to stay mobile and doing as much as he possibly can every day.

The pastoral care team there will probably want to have a chat with you both to see if there is anything needed at home that will make life easier and more comfortable.

Please do take Rosy's advice and take advantage yourself of the time he is in the hospice to get some rest and treat yourself to a bit of quality pampering.

I will be thinking of you

xxx

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User

Posted 01 Jul 2016 at 21:47

Hi Glen,

Really sorry to read this i have got everything crossed that the chemo can bring the PSA back down.

It's a hard old journey isn't it.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 01 Jul 2016 at 22:24

Hi Glen

Thinking of you both

Love Devonmaid xxxxx

User

Posted 01 Jul 2016 at 22:28

Hi Glen,

User

Posted 01 Jul 2016 at 22:42

Thinking of you both and hoping the chemo improves things

Rosy x

User

Posted 02 Jul 2016 at 09:41

Hi Glen

Mt heart reaches out to you.It's a hard journey I know and so empathise with you. We're not so far behind you on this journey and could soon be changig our course of treatment.

I so hope cabazitaxel helps to reduce psa.

Stay strong and positive.

Take care

Lesley xx

User

Posted 02 Jul 2016 at 22:53

I do feel for you, Glen, as we are at a very similar stage. Tony's pain is still manageable with ordinary pain killers but (as I said in another thread) his 2nd cabazitaxel infusion has had to be postponed because his platelet count is too low. It's making him feel a bit helpless and anxious, and he is too anaemic to walk far or do much. Like your OH, he is running out of options, as neither decapeptyl nor Enzalutamide has controlled the cancer for long. He still has no spread to soft tissues, so Radium 223 could possibly still be an option, but the bone spread continues to worsen, and when they saw the scans, both Royal Marsden and our own onco said that cabazitaxel was a better choice for him at this stage.
I know how hard it can be sometimes to keep your (and your partner's) spirits up, but we have to try!

Marje

User

Posted 28 Jul 2016 at 17:22

Well, OH in for 2 units of blood today as Hb down to 7.2. Whole day of a job by the time the cross-match done and blood delivered. Home made cottage pie for tea! Chemo 2 should be tomorrow, 29th, but delayed until 4 Aug to allow the units to get in properly and up his Hb.

He's very tired and extremely breathless but hopefully this will improve over next week.

Appointment for TOPARP (Olaparib) consent 2 Aug to get the biopsies assessed to see if this trial will be an option.

More holidays to re-arrange!

Glen

User

Posted 28 Jul 2016 at 18:02

Hope it perks him up a bit, Glen.

User

Posted 28 Jul 2016 at 20:49

Fingers crossed the blood will help Glen.

Thinking of you both.

Love

Devonmaid xxxx

User

Posted 28 Jul 2016 at 23:38

User

Posted 29 Jul 2016 at 22:08

Hi Glen

Homemade cottage pie, yum yum! Can I come for tea?!!

Hope blood transfusion improves his energies. Stay strong Glen.

Lesley xx

User

Posted 29 Jul 2016 at 23:24

Hi Glen,

Really hoping the bloods will help and I am sure the cottage pie will go down well. I am thinking my lot could do with some home cooking.

BFN

JulieX

NEVER LAUGH AT A LIVE DRAGON

User

Posted 30 Jul 2016 at 08:20

I hope the bloods have helped and that Phil is accepted onto the TOPARP trial.

David

User

Posted 08 Aug 2016 at 07:11

Well, chemo 2 still didn't happen on 4th OH had 2 more units of blood instead as only 8.2. Had pain management assessed by palliative care as in a lot of pain. Now changed to morphine, pain patch and paracetamol with a referral for radiotherapy on spine. Hooefully chemo on 11th.

Glen

User

Posted 08 Aug 2016 at 08:26

Sorry to hear it's all dragging on like this, Glen. It all sounds horribly familiar, but if Phil's chemo has only been put back a week, it looks as if it should all move forward soon.

Marje

User

Posted 08 Aug 2016 at 16:20

Hi Marje.

We went to sign consent for olaparib last Tuesday but it takes 3/4 weeks for biopsies to be assessed so we should know beginning of Sept.

The main problem, as well as low Hb, has been pain management but hopefully things moving forward.

It's the change of dates that's a pain particularly fof hols!

Glen

User

Posted 08 Aug 2016 at 17:20

Fingers crossed for you that you get the pain and Hb under control quickly

User

Posted 08 Aug 2016 at 18:04

Tough times particularly when pain management awry. Really hope they can sort a pain regime which suits. So crucial for you both. Thinking of you!

User

Posted 08 Aug 2016 at 22:49

Thinking of you Glen,

Sometimes this path is not just rocky but full of flipping boulders.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 11 Aug 2016 at 22:35

Glen, I know what you mean about delays and plans, I hope that the pain relief has been adjusted since your post.

AlwAys thinking of you

Love

Devonmaid xxx

User

Posted 12 Aug 2016 at 14:10

Still unable to have chemo following blood test Wednesday. Hb ok but platelets just a bit too low now!

Not eating well and pain not under control.

Been admitted to local hospice to get him back on track pain wise and build his strength and appetite up so can have chemo. Just checked in today very impressed so far.

Also gives me a break from constant worrying that he's not eating.

Glen

User

Posted 12 Aug 2016 at 17:34

User

Posted 12 Aug 2016 at 18:45

Hi Marje, yes he is on a low dose steroid. I feel so much better now he is in there and they can sort him. It's so difficult getting the pain relief right. I've just spoken to him and he already seems brighter! Here's hoping! Sometimes everything compounds and you get in a vicious circle and I think the Hospice will help him out of this.

Take care and hope you get the pain relief sorted too! Thinking of you.

Glen

User

Posted 12 Aug 2016 at 22:54

I hope all continues well with the hospice. Make sure you get some rest and a bit of recuperation for yourself as well while he's being looked after!

User

Posted 12 Aug 2016 at 23:31

Rosy makes a great point Glen, I can only imagine how shattered you must be. He's being looked after and I hope that means you are getting some decent sleep.

Lots of love

Devonmaid xxx

User

Posted 13 Aug 2016 at 21:06

Just wanted you to know that I am thinking of you Glen fingers crossed that the hospice can get everything sorted .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 14 Aug 2016 at 09:48

Hi Glen

They should also really encouraage him to stay mobile and doing as much as he possibly can every day.

The pastoral care team there will probably want to have a chat with you both to see if there is anything needed at home that will make life easier and more comfortable.

Please do take Rosy's advice and take advantage yourself of the time he is in the hospice to get some rest and treat yourself to a bit of quality pampering.

I will be thinking of you

xxx

User

Posted 14 Aug 2016 at 16:42

Thanks for your kind words. I went in to have lunch with him today and then got him to walk rounds the gardens to get him outside and in the nice fresh air.

The staff are marvellous and very caring. He seems to be needing less morphine now so maybe they are getting the pain patch nearer the correct dose.

He is supposed to be having palliative radiotherapy on his spine but the appointment to see the consultant has come through and not until 3 Sept!!! I think a phone call is in order on Monday.

He is eating better, small meals but full of calories by the looks of them! It is hard to see what was a big fell walker just wanting to sit though.

Although I really miss him, it is a lot less stressful knowing that his pain and eating needs are being managed and he is happy to be there to get him back on track hopefully.

Hoping that he will get some therapies tomorrow when full staff are back in, he loves Reflexology.

Glen

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